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Managing celiac disease

Since being diagnosed with celiac disease in 2011, the switch to a gluten-free diet has led Jessica Samuels to a healthier and happier existence.

— image credit: Warren Henderson/Capital News

In the early 1990s, Jessica Samuels began suffering regularly from a variety of maladies, including cramps, stomach aches, nausea, weight loss and fatigue.

Regular visits to doctors over the next two decades revealed nothing about the root cause of the Kelowna woman's pain and discomfort.

In addition to being regarded by one health professional as a hypochondriac, Samuels later had her appendix removed, and was once even diagnosed with the Norwalk Virus.

None of it explained Samuels' dilemma, as she continued to suffer from gastrointestinal problems.

In 2009 and again in 2010, she was admitted to hospital with symptoms which included severe abdominal pain, bloating, diarrhea, vomiting and bleeding—still with no resolution.

Finally in 2011, after undergoing a biopsy of her small intestine, Samuels was diagnosed with celiac disease.

Samuels admits she was both relieved and scared when she was informed of the diagnosis.

"When the doctor called, I really had mixed feelings," said Samuels, 39. "I first thought, 'Oh my God', that's what it is, at least I know now. Then my next reaction was my whole world was about to change—all I thought I knew was that celiacs can't have food. I thought it was over. But of course, that's not the way it was and I soon started living the life of a celiac."

Celiac disease is an immune reaction to eating gluten, which damages the small intestine and leads to a wide range of health problems.

There is no cure for the disease, but it is readily treated by a gluten-free diet.

For someone who never enjoyed cooking or preparing her own meals, Samuels' life was about to take a dramatic turn. Jessica and her husband, Travis, watched their grocery bill instantly soar by as much as 50 per cent.

Still, Samuels soon happily discovered the foods options for celiacs were many and varied—even if careful planning and sticking to a strict regimen presented their share of challenges.

"Coming from a background where I didn't do a lot of baking or cooking, all of a sudden I had to plan every meal of every day. I had columns written of what I could eat and what I couldn't eat. I had a big-box store consumer mentality, so I had to make some changes.

"But like it is with so many things, I soon found out there were a lot of options. There is so much gluten-free food available and recipes out there, you just have to learn about it. Once you get the basics down, it makes it so much easier."

For example, instead of wheat-based pasta, Samuels said rice pasta and corn pasta are more than adequate replacements and are readily available in many stores.

So a task that once seemed daunting and, at times, insurmountable, has become a source of adventure and enjoyment for Samuels.

"It turned into a discovery, it was actually enjoyable uncovering new gluten-free recipes, a fun experience," Samuels said. "Now I cook all the time, I make everything and I really don't mind it at all. And now that so many restaurants have gluten-free menus, that just adds to the choices we have."

As for the residual effects from a gluten-free diet, Samuels couldn't be happier with the outcome.

Other than the rare occasion where she accidentally ingests some gluten-contaminated food, Samuels said she feels like a new person.

"It's like night and day…I feel great physically and I have a lot more energy. Six months after I started gluten-free, my doctor said the damage that had been done to my body was completely healed."

As Samuels follows a gluten-free diet exclusively to treat her disease, hundreds of thousands of North Americans are choosing to eat gluten-free products for other reasons.

Research by gluten-free company Udi's suggests 18 per cent of British Columbians are at least part-time consumers of gluten-free products.

While not yet proven by research, it is believed many people who are not celiacs may be afflicted by a lesser degree of gluten intolerance and are opting for gluten-free food as a remedy.

Still, others are buying gluten-free products because it's trendy, or because their friends are experimenting with them.

As long as people are doing it for the right reasons—not simply as a diet or weight-loss fad—Samuels is all for the gluten-free movement.

"Gluten-free is super trendy right now and sometimes you get lumped in…but I'm a celiac, that's why I do it, because I have to," she said. "I'm not being flippant or mean…but I will say that because of those people who do it to be trendy, there's a lot more demand and that's made life better (for celiacs).

"If you feel (gluten-free) truly benefits your body, then I am all for it."

Since then, Hicks has become well-versed on the subject and now works as an advisor with the Kelowna chapter of the Canadian Celiacs Association.

A registered dietitian, Hicks said once a person is diagnosed, the only effective treatment is relatively straightforward—a lifelong gluten-free diet.

Hicks said a decade ago, when there was far less general awareness of celiac disease, there were considerably fewer options for celiacs, making eating an intimidating daily challenge.

Thankfully for celiacs, times have changed.

"The growth (of gluten-free food) has been huge, even just since my son was diagnosed," said Hicks. "There are many more and better tasting food options, there are so many packaged products that are available now.

"But even more desirable for people is to eat whole foods and healthy foods…fruit, vegetables, nuts and legumes. Anything that is less refined is best."

Even though many restaurants provide more gluten-free meals than ever before, Hicks said celiacs still need to be vigilant about getting information when dining out.

"It's important for celiacs to ask lot of questions, because cross-contamination of foods can happen," she said. "Always tell them you're celiac."

If people suspect their bodies are being adversely affected by gluten, Hicks suggests being tested for the potential of celiac disease.

"We always recommend to people that they get the blood test and the (small intestine) biopsy before going gluten-free," she said. "If you feel poorly, is it gluten, or is something else ? There is still a lot of research being done on whether people are intolerant to gluten without being celiac."

While there is about one in every 130 people living with celiac disease, many health professionals believe that another large sector of society may have a degree of sensitivity or intolerance to gluten. However, research on gluten sensitivity remains inconclusive.

Kelowna dietitian Tristaca Curley deals with several clients who are celiacs and many others who suspect they may have a sensitivity to food with gluten.

"When I see clients with digestive issues, we will often try an elimination diet, sometimes going gluten-free," said Curley, nutrition counsellor and owner of Fueling With Food. "Some people it doesn't impact at all, others it seems to help right away. With celiacs, we know what we're facing, but gluten intolerance doesn't have a diagnostic tool."

Curley estimates about one in five of her non-celiac clients genuinely feel better when omitting gluten from their diet.

Still, Curley doesn't recommend a gluten-free lifestyle for everyone.

"I don't promote it unless there are real benefits to it," she said. "Most people aren't affected by gluten, so taking it out of your diet isn't necessarily the answer. It's like lactose intolerance…if you're not lactose intolerant, there's no need to stop drinking milk.

"Gluten-free seems to have a health halo around it for a lot of people," Curley added, "it's a healthy choice in some circumstances, but it's certainly not the cure-all."

What medical science has proven without question is that gluten is harmful to celiacs.

But how much the composition of gluten has changed over the years and the precise impacts it has had on overall human health, largely remains a mystery.

"There are lot of theories and studies that are ongoing," Curley said. "Some people say breads are created in a different fashion, that gluten could be very different than it once was. We know farming practices have changed, so some people speculate the chemical composition has changed in the grains and, in turn, gluten is different. Gluten in processed foods has increased, too, so that could be another factor."

Tristaca Curley can be contacted through her web site at www.fuelingwithfood.com.

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